The turning point

I have been holding on to this story for a while now and
I wasn't sure I would ever want to share it with more than
just immediate family.
However this event was a turning point in my life and my
families life. What I am about to share is very dear to my
heart and I hope it can be inspiring to you as well.

Dulce was in the NICU for exactly 7 days and it was
like any other day. Greg and I were visiting Dulce.
The Doctor wanted to go over a ct scan with us.
So we went to their computer desk which was
about 15-20 feet away from Dulce's isolette.

The doc then started to show us the scans and was
telling us about what everything was.
I was  in a particularly good mood and I was just
thinking this was standard for the doc to go over this
with us. Though I had no idea this was about to get
very serious very quick.

The doc then said that Dulce had a build up of fluid in
her ventricles and they were abnormally large and misshapen.
I was not understanding anything because they looked small to me.
You must understand I had never seen a ct scan on a brain before
so everything looked fine to me.
I asked for them to show me a normal scan so I could see the difference.
It was quite a shock for me to see how small it was supposed to be.
Dulce's was about 5 or 6 times bigger than it should be.
At this point I was worried, but calm.
Well that changed when the doc then said that they believed that
the build up of fluid was due to a brain bleed she had.

The doc had explained the different levels/grades of bleed.
Grade 1 was mild, Grade 2 a little worse, Grade 3 was moderate
Grade 4 was the max.
She then told us that Dulce had a grade 4 bilateral (both sides).

At that moment I felt the weight and seriousness of the situation.
It felt like the room went quiet and like I was the only one in
room. It was all in slow motion. I did not hear a word the doc
said after Grade 4. I remember having a blank stare and my mind
going a million miles a minute. I got up from my chair before the doc
was even close to being done explaining everything and I walked over
to Dulce's isolette and sat down.

I knew I could not stay there by the Doctor and Greg talking about
this. I had never felt so low in my life and I needed to be next to my
angel. I needed to feel numb I needed to find a way to breath.
I knew if I went next to Dulcinha I wouldn't cry, I would make
myself numb to all the feelings that were trying to fill my soul.
It was too much pain to bear at that time.

I was just watching Dulce thinking she went through this and we
didn't even know and we didn't know how to help her.
I felt sad for my little girl having this happen when she
was so fragile and little.
I wanted to hold her so much, I wanted to have her in
my arms and let her know it was all going to be ok
even if I didn't believe it at the time.

I just stared at her for the longest time. Trying to find
peace. That seat was magical, I found peace there, I
found happiness, I was carried, held, and loved.
I never wanted to leave her side and I didn't want
her to leave mine.

When Greg came back I told him I didn't want to talk.
We were quiet most of  the day. I cried the whole way
home and many more times at home.

The next day another doctor wanted to speak to us.
So we got there early and went to meet them at the
Parents room. To our surprise there was a full room
of doctors. They all seemed to have a sympathetic
feel to them from the way they looked at us.

We sat at the center of the circle. The doc then started
talking about the brain bleed and what it meant and how
it would affect her life.
They told us she would be severely disabled, and that there
was a chance she would
not walk, talk, hear, or see.
He also said they did not know if she would have all these
problems, but she was at a higher risk, but that for sure
she would have disabilities.

He then said that in situations like these we have the option
to turn off life support. He also said we could take some
time to decide.

Immediately blood rushed to head and I was furious.
To think that it would be ok to turn off life support on
my little girl.
I didn't care at the time if it was his job to tell me I
just took serious offense to even the thought of
doing that.

I didn't even look at Greg, I didn't ask him what he wanted
honestly I didn't care because there was only one choice
I could live with. I leaned forward in my chair and stared
straight into the docs eyes and said.

"I don't need time, I know exactly what I want you
to do. You will do everything you can to keep my
little girl alive. She is fighting for her life out there
and I am not giving up on her. I don't care about the
consequences."

I said a few more things because I was so mad for
them even suggesting such a thing, but the point is
that we chose this life, we chose her, we chose.
I know we did the absolute right thing.
I don't believe it is my right to decide when some dies
god does that. I am not god and I knew if god wanted
her he would take her. For me it was a matter of giving
up on her and I wasn't about to do that.

I think it was special and important for us
to go through because we could have backed out
we could have decided right then and there if we
couldn't and wouldn't want to live that life.
I know it empowered me to have been able
 to choose this.
When things get hard even until today I remind
myself "I CHOSE". I would choose her all over
again. She is my little girl and I will never give up
on her.

Recent Hospitalization

On October 8th Dulce started having seizures.

She was gray due to lack of oxygen and even

though I have seen her this way many times before

it is scary every time. 

Whenever she has one of these episodes I just

snap right into this mode of knowing exactly

what to do and at the right time. 

I get quite calm and know exactly what I can

and can't handle. At times it can be a little

confusing knowing exactly when I need the ambulance

because it can be a very fine line between me being

able to handle it and then being in serious danger

because I waited too long. 

So however you look at it Dulce's life is 

in my hands always. I pray everytime that 

I will be able to make the right call and that she will come

out of it ok. 

I had a strong feeling this particular day that she would have a seizure.

I didn't ignore it, I just knew it would happen sometime that day.

So I just went on about my day and waited. 

It was amazing how I didn't question it, I just was very calm

knowing that it would happen. 

I know the Lord strengthens me during these times.

When the first seizure happened it was like someone was shouting

in my head "You can do this". It was an extra boost of confidence.

I know the Lord is by my side every time Dulce has a seizure or when she 

stops breathing. I think that if I didn't feel his presence, I would 

not be able to do half of the things I do and have done in the past.

Dulce ended up having 5 serious seizures, and everyone of them she 

turned grey and I had to give mouth to mouth and a lot of oxygen. 

I was at a critical point where it was going to be too dangerous to 

take her to the hospital alone and I decided at that moment that if 

she had just one more bad seizure I was calling the ambulance. 

I prayed and prayed that she wouldn't have another. 

The Lord answered my prayer and we were able to sleep for a few hours. 

The next day I took her to PCMC and we were admitted.

I was in good spirits just being there because I knew we were at 

the right place at the right time. If anything went wrong

there is no other place I would rather be. 

Going to Primary's this time was different than any other

time I've ever been there. 

I was comforted just by being there. I had never really felt

that other than when Dulce was in the NICU. 

I felt at home. 

My home away from home. 

We only stayed one night and were able to find out

that she had an upper airway illness and due to the

stress of being sick Dulce had those seizures.

Now I can look back and realize how blessed I was.

How blessed and protected Dulce was because I allowed myself

to be an instrument in her life. By saving her every time. 

I will continue to save her forever. 

Two surgeries, one week, WHAT?

When we were hospitalized in December we had
found out that Dulce's hips were dislocated.
Off course right after we found out I was panicking
thinking I had done something that contributed to
the dislocation.
As the Doc was explaining how it was
simply due to Dulce not using her legs and not having
sufficient muscles to hold the hip in place
I was not able to shake the feeling that I
had not done everything that I could have to keep
them in place even though I had no idea this could
happen.
At the time we had many things to worry about
and the hip thing kind of had to go to the back
burner, but we knew we would have to deal with
this situation. A month later we tried to make an
appointment with an orthopedic surgeon. When we
got there and told them about the hip dislocation
to the front desk as we were trying to make and initial
appointment.
 The receptionist went and talked to the
Doc and he said that we should go to the emergency
room and get her hips relocated and then he would see
us. They were shocked we had come there with them
dislocated.
All of this time the receptionist was the only one who saw
us. At this exact moment I was so grateful for having the
knowledge to know that this might pertain to another child
but not my Dulce. If I had listened to them this could have
been a long waste of time. Because I knew the ER were
not going to do anything about this.
I told the receptionist that I was going to do no such thing
and we just needed an appointment and that the Doc needed
to see her to make that judgement. Because I knew if he just
took one look at her he would realize what he said was ridiculous
and does not help every child.
Well the Doc was quite concerned about us going home that
he had the receptionist squeeze us in right away.
I only waited 10 minutes and when he saw her he got it.
We did some ex-rays and found out that it had been dislocated for a
long long time. He then explained the surgery he would do
if she started to have pain which she was not having at the time.
The procedure sounded very painful and I was hoping we
would not have to do this any time soon.
We went home and just tried to not think about it.
We have to do this quite often because if it is not
happening at the time we have to not think of it
or we will go crazy just thinking about everything
that could and would happen.
So we try to deal with only a few things at a time.
I don't know if there is any right or wrong way to
deal with our trials, but we do the best we can.
By the way I think I should explain what I mean
by trial. I don't ever think of Dulce as a trial.
A trial to us is the things and illnesses that happen
to Dulce. I know she has such a harder time due to
the fact that SHE IS THE ONE who is going through
them. We are just outsiders just suffering right along with
her. Ok back to the story.
I knew I just needed to watch for signs of pain.
Well I noticed she got more uncomfortable during
diaper changes. I was told this might be the first sign.
Things progressed quickly after that. Dulce felt
pain all the time and it was hard to control with
all the meds we had available to us.
We scheduled the surgery for April 7.
I knew this was not going to be easy, but it needed
to happen. We just wanted that pain to go away.
It was horrible to watch her being in pain, but I knew
for a little while we were just switching one pain for
another, but deep down I knew it would be worth it.

We went on as usual and we happened to have
a follow up on my son's Doc to check on his kidney
because it was emptying very well ever since he was
born. We did not however expect that it had gotten
much worse and that he was going to need surgery
right away and it could not be put off because it
would cause damage to his kidney.
When I was told this I just smiled. I mean what
are the chances of both of your kids needing a surgery
around the same time.
I was not surprised due to us not having good luck ever.
When I was scheduling the surgery for Kellan they said
we would have to take the first date available which was
April 13. It was 6 days after Dulce's surgery.
Then I was really smiling just because I was shocked.
Oh wow two surgeries in one week, and the thing
that just baffled me was the fact that both were urgent
and there was nothing I could do about it.

My mom just happened to be with me when we found out
and she was panicking wondering how I was going to do
all of this. I was quite calm and just kept telling her everything
was going to be fine. Deep down I knew it would be and
this might actually be a blessing to be able to take care of
both at the same time.

A couple of days later I was just sitting on my couch
wondering how I was going to make this miracle happen.
I was praying in hopes of figuring out what I needed
to do or how I was going to be able to do all of this.

I knew that Dulce was going to need a lot of attention
even though I had no idea of what I would need to do
or any specifics on her post surgery care.
I was going into it blindly and that freaked me out.
One thing I knew though which is just the basics
of keeping track of meds, vitals, and keeping a very
close eye on her oxygen need.

I had no idea how Kellan was going to react to the surgery
but I knew he was probably going to be very clingy.
I prayed and prayed about what to do.
The answer was clear. To talk to the Relief Soceity.
I remember thinking I didn't want to bother anyone, but
a thought would come to me that I couldn't and didn't
have to be super woman and it was okay to ask for help.

I knew it was the right thing for me to do.
I received a great response and I felt much more confident
about facing this.
Usually when something big is about to happen to our family
I am so calm and I realize that there was no need to worry
too much because it had not happened yet and I had already
done everything I could have to prepare the best I could.

The relief soceity had come up with the best way to help
me during that time. Their idea was to have the ladies
from our ward come to my home for 4 hours a day and
they were going to work in shifts of 2 hours and they
would help with whatever I needed to do for the kids.

I have to take a little time and tell you how having those
wonderful ladies come to my home blessed my family.
Knowing that these particular ladies had volunteered
to come and cuddle Kellan, bathe Dulcinha, clean my
house, fold laundry, or just to chat. It meant the world
to me. In a time when we were going through something
so difficult to have these ladies come and support me daily
it was an amazing experience. If having to go through both
surgeries in one week was just to know and experience this service
from the women I can tell you it was all worth it. I have a new
found respect and understanding of the word "Service".
I feel I have gotten to know these ladies so much better.
This was a teaching experience for me and I am a better
person for it.

to be continued....

Advocate

Immediately after Dulce was born I felt how I truly

had no control of anything that was happening.

From even wanting to be in the same hospital with

her, to be able to go see her in the middle of the night.

All I got was five minutes with her and then she was gone.

I got to see her two days later. 

When I got to the NICU things got worse because

all the staff including Doctors, nurses, and charge nurses

were acting like Dulce was property of the hospital

and all I could do is watch and do what they said.

I was upset and confused and trying to figure out this

situation I was in and I had no idea what to do.

It was hard to have the nurses tell me I couldn't 

touch her or even talk to her. That hurt me deeply

because I was trying so hard to be there for her

and to bond. How could I do that when she didn't

know I was there? 

Then they told me I had to wear gloves when I touched

her, but some nurses weren't even using them. 

I started to get VERY mad.

I got sick of them always making decisions and not 

running anything by me. They just thought "I know best 

so just sign this paper and step back".

It felt like everything was going by so fast and that

I was loosing track of everything they were doing

to her. 

I had a strong feeling this was not how it was supposed to 

be. I really wanted to be involved and didn't know how.

One day my prayer was answered when a Social worker

came to Dulce's bedside to check on me and see how I

was doing. I had never met this lady before and I didn't 

want to talk to her and I didn't even know what she did.

She could tell I was just being cold to her and not wanting

to talk. Honestly I was talked out between nurses and 

Doctors giving me updates and telling me everything 

that was going wrong. So 90% of the time anyone 

talked to me it was always bad news. I think this 

day I had already had my fill. 

I'm grateful that before she left I asked her what she

could help me with. She then listed the help she

could provide and one of those things was to 

be advocates for parents. 

When I heard her say that a light bulb went on.

I then started to tell her about how I had no control

over what was happening to MY little girl. Nobody

was including me in anything when I WAS THE ONE

WHO GAVE BIRTH TO HER! It felt very unfair.

She helped me do a care conference where I would

get all of Dulce's Doctors and nurses and charge nurses

in a room and I would talk to them about what I didn't 

like that was happening and how I wanted to be involved

and how I wanted to have things explained to me and I 

set a few guidelines of how I wanted things to go.

For example ALL the nurses now had to use gloves,

I was going to be more involved during my visits

and now they had to run everything by me before

doing anything. 

It felt so good to finally speak up and let them know

how I expected to have things done and that I wasn't 

just going to step back and not get involved in

my daughters life.

Things started to get better right away.

Ever since then being Dulce's advocate has come
naturally to me and I feel grateful that I am not
scared and I don't hesitate to stand up for my
little girl. I believe it has changed our lives
forever. 

STRONGER

I hardly remember what kind of person I used to be.

I don't remember what I used to think about certain

things and my feelings and opinions. 

I don't remember what I used to feel strongly about.

I don't remember feeling completely devoted to any

one thing. 

I don't remember having such a strong love for someone 

that I knew the love alone would carry me through. 

I don't remember giving a disabled child a second glance.

All of that changed when I met my little Dulce.

It seems like my life before was without purpose.

It seems like I didn't begin living until she was born.

It changed my life completely. 

It changed the way I feel about life, dreams, wishes,

prayer, and blessings. 

I have more to say about everything I don't know if that's 

a good thing or bad, but I know I have been through so

much that there isn't something I feel I can't relate to. 

I have learned so much about being a mom, caregiver,

and most of all an advocate. 

What a huge blessing it has been to have my eyes 

opened about a child with disabilities and all that entails.

I now understand what perfect really means.

I feel like a completely different person, like I am 

finally fulfilling my purpose in life. 

I am so much stronger for having gone through

all the trials up unto this point.
I am very grateful for every moment happy or sad 

good or bad and for all the ups and downs. I know

it has brought me to this point and I couldn't be happier

to be STRONGER.

First hold

Dulce was three weeks old and still so fragile,

but by this time I had pretty much given up on

the idea of holding her in my arms ever.

I had to try and come to terms every time the

desire came to me. It felt so unfair.

I would watch as the other mothers got to hold

their babies and I so longed to have contact with

Dulce. The days seemed so long sometimes because

I could not have the embrace I was yearning for.

I kept wondering what she would feel like.

Would I feel her weight or a bunch of blankets

which is what I kept hearing from people.

It seemed like I was so aware all of a sudden of

mothers holding their babies and specially

pregnant women and I must say it was quite

annoying because I just wanted to ignore them,

but it seemed like they would appear out of nowhere.

I swear I could spot a prego a mile away.

I longed for the months I missed and it was also a way of

holding my baby, a way of protecting her, but it was not

ever going to happen.

One day the nurses started to mention doing some

skin to skin. I had heard all about this from day one

in the NICU, but the very words that followed were,

but she is too fragile still. So as I heard this I was

waiting for the but...

Instead they said if she was having a good day with

no events and if she seemed stable I could hold her.

The nurse had told me we could check every morning.

So that's what I did. I would call and see how her night

was and if today was the day.

After a few yes's that quickly turned into no's due to

some event of the day. My day had finally come!

Dulce was having a good day and I tried to prepare the

best I could like taking a shower right before my visit

and putting nice fresh clothes on. I also invited my mom

to come share in this special moment since Greg had to work.

My mom was also going to record our first embrace.

So I got to the hospital and I was so anxious and READY!

I put on a hospital gown and I sat in a rocking chair right

next to Dulce's isolette.

It was quite the ordeal to move Dulce because of all the

cords and off course the ventilator and Iv's.

The nurse finally handed Dulce to me and I just felt

like I was holding blankets because she was so light

and also because she was really bundled.

It was so nice to be so close to her.

The position wasn't quite right and I couldn't

adjust her due to the ventilator so I couldn't

explore her features like I wanted too.

She was face down on my chest.

While I was holding her the nurse was telling

me how some babies relax in their mother's

arms and that could potentially be dangerous.

Well a minute after she had told me this.

Dulce started to desat and she had a serious

apnea and bradycardic spell. The nurse had to try

and resuscitate Dulce right there in my arms

because it would take too long to move her since

they had pinned all tubing on my gown.

I sat there helpless trying not to move so I wouldn't

make things more difficult for the nurses.

So my little girl got on my lap for the very first time

and she relaxed. Too relaxed that it threatened her

life.

Meanwhile my mom was recording this from the

beginning and as things went downhill she didn't

know what to do so she kept recording.

The nurse just kept on working to get Dulce's

levels to come back up. I remember seeing

panic in the nurse's eyes and she kept repeating

"Come on Dulce, come on Dulce".

I knew what she was thinking. She was thinking

"please don't let this little girl die in her mom's arms

right after the first time she ever held her"

It was so clear as if she was saying it out loud.

I was worried, but calm. I had a feeling she was

not going to die so I held on to that and tried to

calm my breathing and heart rate to try and help

her in some way. Because I had heard that they will

try to mimic your breathing. That was the extent of

what I could do.

Finally Dulce stabilized and we were able to move her

to the isolette again. So that was my first time holding

my precious Dulce. Not at all what I expected.

My little girl almost died in my arms and I don't believe

I will ever be able to forget that experience.

No matter how scary that was I also LOVED the short

period I had her so close to me. I knew as well if something

bad had happened during that episode I was glad she was in

my arms where she belonged.

The other times I held Dulce she did just fine.

I tried to watch the video of the first time and

I was able to watch only a minute before I realized

I did not want to remember that in so much detail.

I was never able to watch the whole video.